A Mother’s Story

When Billy Lost His Words’ and Other Tales of Life ‘On the Spectrum’

An image frequently associated with autism is the puzzle. You’ve probably seen it on “Autism Awareness” bumper stickers and car magnets.

Living with autism is like trying to put together a puzzle when you don’t have all the pieces, you don’t know where to find them, and you’re not even sure what the puzzle is supposed to look like when you’re finished.

My puzzle might look nothing like your puzzle. And to complicate matters, well-meaning people keep handing us pieces that may or may not fit.

My son, Billy, was born on July 23, 2006, and I was certain I saw a spark of genius in his big, beautiful eyes right from the start. Based on my limited knowledge of motherhood, I was convinced that by the time he was 3 months old, I would be able to hand him a set of Baby Einstein flashcards and go back to magazine editing while he sat in a corner and quietly taught himself French.

That didn’t happen, obviously, but he was a pretty precocious baby. He hit all his milestones, either on time or early. He babbled when he was supposed to babble, and he walked at nine months. By 10 months, he was identifying “Daddy” and “Nan” and “Pop” and asking for his “buh-buh” (bottle). He smiled at us, laughed and even made funny faces to make us laugh.

By the time he was a year old, he was running everywhere. The second his feet touched the ground, it was as though he had been shot from a cannon. With a high threshold for pain, he seemed to literally bounce off the walls, pick himself up and keep going.

We laughed at his temper and stubbornness and applauded his sense of “independence.” That’s how we explained away the fact that, at around 14 months, he began to ignore us when we called his name, stopped talking and played predominantly by himself.

I was shocked when, at Billy’s 18-month checkup, the pediatrician identified these traits as autism “red flags” and sent us for a hearing test. This would be the first in a long line of tests on the road to diagnosis.

But Billy wasn’t “Rainman.” He could smile, he liked to cuddle and he was clearly smart — not speaking French, true; he wasn’t even speaking English, but I knew my baby.

Before he turned 2, after a series of developmental evaluations, we agreed to speech therapy. It cost us $60 per half-hour, twice a week; our insurance didn’t cover it, but we were happy to pay that for the best therapist we could find in our area.

As Billy got a few months older, other issues began to materialize. He still wasn’t responding when we called his name. Toe-walking was identified as another red flag; the constant movement, high pain threshold, and crashing and banging into objects were yet more signs that he was a “sensory seeker” with a potential sensory processing disorder.

Sensory processing disorder occurs when an underdeveloped nervous system can’t make sense of the sensory input it receives. A child might have difficulty taking in sounds, for instance, analyzing them and assigning more importance to human voices than other background noises. Another child might be “tactile defensive,” making human touch almost unbearable to him or her.

Billy wasn’t getting enough input from walking normally, so he went up on his toes in order to feel each step more profoundly. He could spin around in circles non-stop and never get dizzy.

At the same time, he couldn’t bear to have anyone touch his head, and the sound of the vacuum cleaner or food processor sent him into complete meltdown. (Luckily, with my housekeeping skills, we didn’t crank up those appliances too often.) Crowded restaurants were an absolute no-go, and he would have a gag reflex if offered anything to eat besides bread, cheese or fish sticks.

Occupational therapy would mean an additional uncovered $400 or more per month, and we weren’t sure our budget would support our growing medical bills. Luckily, we were introduced to the Early Steps program.

Available for all developmentally delayed children up to the age of 3, Early Steps connects families with early-intervention services, free of charge, that can include speech therapy, occupational therapy, physical therapy and more. Early Steps arranged weekly speech therapy in our hometown and sent a nurse/early interventionist into our home to work with Billy on communication and problem solving.

Early Steps also connected us with a wonderful program through the Florida Elks that provided free occupational therapy in our home once a week. Our occupational therapist, Anita Smart, changed our lives and our attitudes toward our son’s development. With her help, we began to educate ourselves and learned that “Rainman” is about as representative of autism as a Porta-Potty is of architecture.

Our favorite word became “spectrum.” Autism exists on a spectrum, with severely autistic, nonverbal people at one end and highly functioning, extremely verbal, quirky characters at the other. Everything from childhood schizophrenia to ADD finds its way onto the spectrum somewhere.

But if autism is on a spectrum, surely “normal” is as well. And we started to look at the unique way our son’s brain worked with less fear than fascination.

By the age of 3, he was talking almost nonstop. His functional language was still limited to a few one or two-word commands, but he could recite entire TV shows and books verbatim. He had a catalog of over a hundred songs, some he had heard no more than once, some he hadn’t heard in months, and he has a beautiful voice, pitch-perfect.

On the advice of a neurologist, we took Billy for an MRI to rule out seizure disorders, stroke, tumors and a number of other conditions much more disturbing than the “A-word,” as we had started calling it. It was a harrowing experience. When the nurses inserted the IV, his scream chilled my blood, and I swore that if I could get him out of there, I would stop testing my son and focus on parenting him.

The results of the MRI: nothing physically wrong. So we get our diagnosis: autism.

There are upsides to the “A-word.” Insurance blessedly began covering speech and occupational therapy. Since we moved to Tallahassee last summer, we were introduced to our wonderful new therapy team at Tallahassee Memorial Hospital’s Pediatric Rehab Unit, where Billy also enjoys music therapy.

And he goes to school. At Little Chaires Pre-Kindergarten, he has a devoted teacher, another committed speech therapist and occupational therapist, and he has friends. Friends.

The first day I visited, I saw a beautiful little girl reach out, smile and take his hand. Billy looked up at her, smiled back and started singing a song. She joined in, and they walked to class together, hand in hand. I had to excuse myself to the bathroom, where I cried a little while by myself, before rejoining the class for a cooking lesson.

Billy speaks more every day. He says, “I love you, Mama,” and occasionally takes my hand and asks, “Come play castle.” He scoops up his baby sister, pulls her into his lap and cuddles her. He can spell his name.

He has started asking questions. He can sing 200 songs and recite every book or TV show that he’s ever seen, which he still does quite a lot of the time.

Billy’s puzzle isn’t finished yet. We’re still putting it together one piece at a time, and more than likely, when it all comes together, the final picture will still include autism to some degree. But we’re cautiously optimistic that it will ultimately be one small piece. His will be a picture colored by music and friendship and family and a knowledge of what it is to love and be loved. It will be beautiful, and the world will be a more beautiful place for having Billy in it.

Amanda Finch Broadfoot is a freelance writer and mother of two in Tallahassee. She blogs about autism, parenting and “Spinning Plates” at amandabroadfoot.com.

If You Have Concerns About Your Child …

Center for Autism and Related Disabilities (CARD)autism.fsu.edu
Start here. Fact sheets will explain developmental milestones, and regional support centers can provide everything from in-home evaluations to support tools for living with autism.

Early Stepscms-kids.com/home/faqs/early_steps.html
Offered by Children’s Medical Services, the Early Steps program provides early-intervention services for infants and toddlers with special needs.

Florida Elks Therapy Services
flelks.org
Physical therapy and occupational therapy are provided to Florida children who don’t have easy access to these services. Download a patient application online.